We need to talk about Deaf people’s mental health. Now.

TRIGGER WARNING: contains descriptions of attempted suicide, suicidal thoughts, and emotional distress.

In April this year, Daniel MJ Webster ended his life. He was Deaf, and in his late 30s. He had been assessed as having severe mental health problems, and needed urgent attention.

However, instead of the specialist Deaf-focussed therapy requested by his GP, Mid-Essex Client Commissioning Group (CCG) referred Daniel to mainstream counselling with a BSL interpreter. 

As a result, the UK Deaf Community lost a funny and lively young man who was much loved by many, with his family so consumed by grief that they have asked for total privacy. The specialist counselling service, Deaf4Deaf, have launched a JustGiving page for a MH support fund in his memory. They plan to raise £50,000 for six emergency counselling sessions to be offered to 278 Deaf people with severe mental health problems.

While I recognise that six sessions will never be enough, my hope is for the 278 to be recognised by the UK mental health system and gain access to longer-term counselling support administered by BSL-using professionals.

After all, this is happening against an UK-wide backdrop of mental health service cuts continuing for the ninth year under Tory governance, with 83% of schoolteachers reporting deteriorating mental health in children, and two thousand mental health staff a month leaving NHS England last year.

All of which mean double the barriers for Deaf people seeking qualified counselling support. Not only do they experience cuts in those services; they also experience cuts in accessing them. I am hardly surprised that Daniel’s request was rejected by a CCG. 

When the coalition replaced Primary Care Trusts (PCTs) with CCGs in 2013, for the first time in its history the NHS’ commissioning of individual healthcare services became an open market. The PCTs’ code of practice required them to commission public services only, prioritising duty of care. Consequently, they were treated as de facto investments in the public’s health, with the higher cost reflecting quality of service. They funded Deaf-focussed counselling more willingly. 

That changed with the CCGs. Public healthcare providers found themselves competing for bids with private bodies, who didn’t necessarily value duty of care, weren’t as qualified, and sought instead to undercut their public rivals whatever the cost. This is where the likes of Virgin Care muscled in, complaining about the NHS swiping service contracts from under their noses.

Let me show you a real-life experience of how those changes have impacted directly on Deaf users of counselling services: namely, mine. 

I live with depression, anxiety and PTSD. I have made one suicide attempt in Weston-super-Mare, in 1992. I’d got myself very drunk and bagged a lift to the pier at a stupid hour of night, where I intentionally clambered onto the rocks before passing out. Next thing I remember, I was shivering from hypothermia in a foil blanket, still wishing I was dead, while the fluorescent corridor lights of the local A&E sped past from above. 

I have contemplated suicide many more times since: particularly 2011, 2012, 2013, 2014, and last year. I haven’t always been mentally ill, because it’s usually triggered by traumatic life events. I have had two courses of counselling with SignHealth, in 2012 and 2013.

I’ve also had mainstream counselling. After my suicide attempt I was referred to my university’s mental health service, where I met a trainee counsellor who’d just cracked how to keep her emotions in check. Asking her to adapt communication was too much of a stretch. So I quit, and tried working through my depression on medication instead.  

My next course of therapy was provided by MIND, who sweetly tried to match me with a disabled counsellor in 2001 following a messy relationship split, and my father’s cancer diagnosis. 

She was certainly kind, accommodating, and very proficient. But her being disabled and not deaf, and my being deaf and not disabled – I know this sounds weird to some of you (it doesn’t to me and my deaf friends), but bear with me – ensured that I spent most of my time explaining my perspective as a deaf person, rather than addressing the actual issue in hand (however easy she was to talk to). 

Twenty sessions later I declared time up, having found love again. In retrospect I wasn’t emotionally ready to move on, and the counsellor hesitated a little at first. Being so professional though, she understood it wasn’t her place to dictate what I should do.

I also saw two Relate counsellors on two separate occasions in 2011 and 2014, both times with BSL interpreting support. Both proved unsuitable because they lacked Deaf insight, and prattled on instead, thinking they knew better. 

How much I have had to tolerate, and for so long, before I could properly express myself as a Deaf person with mental health issues, is as jaw-dropping a memory today as ever. I am capable of communicating in both oral English and BSL: yet I cannot avoid that being affected when I’m describing emotional trauma – however hard I try to maintain clarity throughout.

In that context a mainstream counsellor, even one relying on a perfectly competent BSL interpreter, would misunderstand their Deaf client far more than is necessary. I’m sure the last thing any qualified mental health professional with integrity would want to do is add more stress.

Yet that is exactly what I’m getting from the UK mental health system today. Despite the advances made by the DDA and its successor the 2010 Equality Act; despite the 1998 Human Rights Act; despite more Deaf people and BSL allies becoming qualified counsellors – I am struggling more to access it than before.

It’s not like I’ve shied away from discussing my problems either. Look: just one person can save a life. I am only here today because one person decided to get some fresh air at five o’clock in the morning in Weston-super-Mare, all those years ago. Just one person. It breaks my heart that no-one was there for Daniel Webster in his hour of need. So if I can save one Deaf person’s life with this blog, then it will have been worth my sharing something so raw and intensely personal. It is the least I can do. 

After a quick succession of traumatic incidents in late 2017, and again in early 2018 triggering flashbacks, I started visiting my GP once a fortnight. They’d log issues as they arose, prescribe antidepressants, and refer me to a psychiatrist (for diagnosis) and SignHealth (for counselling). The last two times I did that – in 2012 and 2013 – I was seeing a Deaf-focussed therapist within a few months. 

This time round, the referral has taken 15 months. BSL Healthy Minds, the counselling service run by SignHealth, assessed me for cognitive behavioural therapy (CBT) and depression only yesterday.

That happened because I wasn’t prepared to be accepted for mainstream counselling with BSL interpreting support, just like Daniel Webster. When I complained to my GP about my referral to them for assessment, my CCG interjected that I had to go down that route first before they could agree to the alternative – just like Daniel’s CCG.

Determined, I raised the issue in an email to the mainstream provider. They wrote to my GP, who wrote to the CCG, who wrote back saying they’d already rejected my request for BSL counselling, in February 2018. My GP then wrote to the mainstream provider, asking them to support my request in writing to the CCG, and posted me a copy of their letter.

Again I emailed, this time addressing both mainstream provider and BSL Healthy Minds, begging them to please make my request a priority. I got my daughter’s social worker to post her own written support – thus triggering a cross-party alliance of social services, GP, mainstream provider and BSL Healthy Minds, all badgering the same CCG to change their blasted minds.

Now, I have to wait another 28 days before I know if I can have 20 sessions with BSL Healthy Minds – even though I have a high score in all three areas assessed: depression, anxiety and suicidal tendencies. And I was diagnosed with PTSD by a psychiatrist in May last year. Tell me, how is this my CCG making my case a priority?

Clearly, my deafness has never been the problem. It is society’s attitude to it that is: the same society that flusters when they realise they have to find another way to communicate with a Deaf person. The same society that aggravates my mental health issues, and those of many others, like Daniel Webster. They know, only too well, that communication is a two-way street.

They have simply chosen not to make it so.

Click here to donate to the Daniel MJ Webster Deaf Mental Health Fund

If you are a Deaf person with mental health problems and you are at crisis point, you can email the Samaritans for 24-hour support on jo@samaritans.org  Otherwise, ask BSL Healthy Minds for a referral to their psychological therapy services on therapies@signhealth.org.uk

You can also self-refer to Deaf4Deaf here.

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Toy Like Me: a statement

18% of the UK population are deaf or disabled, and this figure is on the rise due to people living longer. Every man, woman, and child is likely to see disability on the street every day. If toys are to educate about the world around us today, shouldn’t their manufacturers acknowledge deaf and disabled children too?

Take my daughter Isobel. She is seven and one of the cheeriest little girls I know. (Don’t take my word for it: her school says the same.)

Despite being a happy-go-lucky princess who loves sign-singing, dancing, sparkly shoes and tutus, Isobel has shown little to no interest in conventional High Street toys. She has never embraced her only doll, a Bratz figure given to her as a Christmas present. Indeed, she has pushed it away with such regularity and force that her younger, non-disabled, brother has quit trying to get her to play with it.

Of course, Isobel isn’t your average little girl. As someone living with cerebral palsy and restricted mobility, she is much happier relating to other disabled children (who, incidentally, are a regular feature on her favourite television show, Cbeebies’ Something Special). With its cartoonish, defiantly non-disabled shape, that Bratz doll is the last thing she wants to aspire to.

Before anyone opines that it is a matter of taste, I can categorically state that it is not. In April last year, I plonked a giant teddy bear in her buggy with its legs in splints that she’d outgrown. Upon seeing it, my six-year-old daughter was moved, and gave me a massive hug. (This is significant. Isobel has no speech and signs very little, and had never shown such emotion before.) A lollipop-stick Kay-walker that I made just like hers, to go with a Moxie doll, triggered a similar reaction.

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An early #toylikeme prototype, and Isobel aged six
Those experiments were among the earliest prototypes created for Toy Like Me, the campaign for better representation of disability in mainstream toys. 

Started by a group of parents who were either themselves deaf and/or disabled, had disabled children of their own – or both – it initially worked by customising toys representing disability in a fun way, and sharing the photos on a designated Facebook page and Twitter with the hashtag #toylikeme.

Together we kept busy calling upon the biggest UK and global toy manufacturers – Mega Bloks, Mattel, LEGO, Playmobil, Fisher-Price and Little Tikes to name a few – to remedy their current ranges by adding positive representation of disability to the toy shop shelves. Rather than making it our business to produce the toys regularly, we wanted them to make it theirs.

Of course, we were aware of toys representing disability already on the market. However before Toy Like Me, you had to do the legwork, or go via medical companies like Cochlear, who supply dummy CI processors for your child to attach to their teddy.

Otherwise, the disabled toy figure you were most likely to see on the High Street either occupied a sterile medical setting, or was nearing the end of their lives. This is surely a major disincentive for assuring a Deaf or disabled child of their place in mainstream society.

Where were the wheelchair-using pirates, the disfigured princesses, the fairies in arm-splints, the deaf cheerleaders, the blind Action Men that would boost the body confidence of Isobel and 150 million other children like her worldwide?

Where were the toys that would give them something to play out their own, real-life, experiences through?

The customised Moxie doll
They would assert to the world that not only do deaf and disabled children have aspirations of their own – but are just as fun to play with as non-disabled children. They would provide an excellent opportunity for non-disabled children to learn the value of living alongside their disabled peers as an irrefutable part of humanity, rather than an abomination. Their novelty value would come from the fact that a child is not born with an attitude, but learns it through the influence of others: specifically, adults.

I am honoured to have been one of Toy Like Me’s founders, working with deafblind journalist Rebecca Atkinson (who I must credit the initial concept to) and play consultant Karen Newell – whose son is registered blind – to raise awareness of the issue worldwide. As its social media manager, I’m proud to have fuelled its exponential growth with the first celebrity retweet – by the disfigured model and disability rights campaigner Katie Piper – in just three days following the official launch, quickly followed by comedian Rory Bremner and CBeebies presenter Cerrie Burnell.

Two of our first celebrity endorsements. April, 2015
I have never had a project snowball quite like Toy Like Me. The Facebook page alone went from 200 ‘likes’ in 10 days to over 24,000 in four months, with endorsements from not just the aforesaid celebrities but also Glynis Barber, Eastenders actor Rita Simons’ husband Trey, actor Josette Simon, amputee model Kelly Knox (winner of Britain’s Missing Top Model), author Julia Donaldson, comedy writer and actor Stephen Merchant, and many, many more.

Parents from scores of countries including Britain, Israel, Turkey, Singapore, America, France, Italy, and Japan have shared pictures of their own customised toys with the hashtag #toylikeme on Facebook and Twitter. Some have even started their own businesses online. Our first Change.org petition, which addressed Playmobil, quickly amassed over 50,000 signatures and resulted in the multinational giant agreeing to consult us on a new range of disabled toys.

Media from across the world took notice (and still are, as I type). As co-founder I particpated in TV interviews with BBC’s See Hear – where I got to meet the world’s first ever set of disabled dolls (created by Makies), including one with a facial disfigurement named after me, in honour of that first, meteoric, celebrity retweet – and the American TV network station CBS (clip here). 

Me, meeting the world’s first set of disabled dolls, made by Makies. See Hear TV interview, summer 2015
Due to heavy parent-caring responsibilities, I had to step down earlier this year. The decision was not taken lightly and I am grateful to both Rebecca Atkinson and Karen Newell for their support.

Toy Like Me is one of the most singular and greatest successes I have ever contributed to. I couldn’t have wished for a better, or more novel, project to be part of. That a major website has been launched since my leaving – offering a one-stop resource for buying disabled toys online – is exciting news indeed and I, and I’m sure Isobel would, wish my hitherto collaborators, supporters, and everyone else involved in the campaign, every success in advancing the future of toys.

www.toylikeme.org